| Literature DB >> 35755303 |
LaShara Davis1, Yaquelin Arevalo Iraheta2, Erica W Ho3, Ariana L Murillo3, Ashley Feinsinger4, Amy D Waterman1.
Abstract
Rationale & Objective: Despite the development of numerous educational interventions, there has been limited change in actual living donor kidney transplant (LDKT) rates over time. New strategies, such as the inclusion of patient stories in patient education, show promise to inspire more people to donate kidneys. This study identified the challenges faced, coping strategies used, and advice shared by transplant donors and recipients. Study Design: Qualitative thematic analysis. Setting & Participants: One hundred eighteen storytellers across the United States and Canada, including 82 living donors and 36 kidney recipients of living donor transplants who shared their stories on the Living Donation Storytelling Project (explorelivingdonation.org), an online digital storytelling platform and library. Analytical Approach: A poststorytelling survey assessed participant demographics. Two coders conducted tool-assisted (Dedoose v.8.3.35) thematic analysis on narrative storytelling videos and transcripts.Entities:
Keywords: Kidney transplantation; adaptation; living donors; narration; patient education as topic; psychological; qualitative research
Year: 2022 PMID: 35755303 PMCID: PMC9218227 DOI: 10.1016/j.xkme.2022.100486
Source DB: PubMed Journal: Kidney Med ISSN: 2590-0595
Sample of Storytelling Prompts
| Storytelling Prompts | |
|---|---|
| Donors | “Hello, my name is (Name). I donated a kidney to (recipients; ie, Dad, sister, etc)” |
| “When I started to research living donation, the most surprising thing I learned was…” | |
| “I had many private & personal fears and questions about the process, the main ones were…” | |
| “Different sources of information helped me learn and kept me informed, like…” | |
| “I ultimately decided to donate a kidney because…” | |
| “My family (children, spouse) worried that…I helped them understand…” | |
| “It got harder or scary for me when…What helped me get through it was…” | |
| “Leading up to the procedure, I coped with the stress by…” | |
| “When I share my story, I am often asked the question of…” | |
| “Looking back, the best part about donating a kidney was…” | |
| “What I discovered about myself during/after this experience was…” | |
| “The best advice I could give someone else who is considering being a Living Donor is…” | |
| Recipients | “Hi, I’m (Name), I received a living kidney donation from… (eg, Dad, Sister, Stranger, etc) about (X) months/years ago.” |
| “My kidney failure began when I was (X) years old. At that time, I was doing (common activities for you before the transplant) … but then I started to notice (changes that affected your daily life)” | |
| “Living without working kidneys meant that… The first time I had a dialysis treatment was … (explain how it felt)” | |
| “I found it…(difficult/easy) to talk about living donation with my family and friends, because…” | |
| “Even with my fears, I decided to try to find a living donor because…” | |
| “When… (Donor) first said they would think about donating a kidney, I felt…” | |
| “On the day of the procedure, when I was being rolled into the operating room, I was thinking… and feeling…” | |
| “The relationship that I have with… (Donor) today, is… What I learned about myself/others is…” | |
| “Looking back, this is what I didn’t expect. The only thing I regret is…” | |
| “What I learned from this entire journey was…” | |
| “My advice to others who need a kidney is…” |
Indicates prompts selected for the qualitative thematic analysis of this study.
Storyteller Characteristics (N = 118)
| Characteristics | Overall |
|---|---|
| N | 118 |
| Age interval, n (%) | |
| 18-30 y | 8 (6.78%) |
| 31-40 y | 18 (15.25%) |
| 41-50 y | 29 (24.58%) |
| 51-60 y | 33 (27.97%) |
| 61-70 y | 20 (16.95%) |
| 70 y or greater | 1 (0.85%) |
| Did not respond | 9 (7.63%) |
| Gender, n (%) | |
| Female | 76 (64.41%) |
| Male | 35 (29.66%) |
| Did not respond | 7 (5.93%) |
| Race, n (%) | |
| White | 79 (66.95%) |
| Black | 10 (8.47%) |
| Asian | 3 (2.54%) |
| American Indian or Alaska Native | 3 (2.54%) |
| Multiracial | 3 (2.54%) |
| Other | 4 (3.39%) |
| Did not respond | 16 (13.56%) |
| Ethnicity, Hispanic, n (%) | 9 (7.63%) |
| Story type, n (%) | |
| Recipient | 36 (30.51%) |
| Living donor | 82 (69.49%) |
| Education, n (%) | |
| High school or GED | 4 (3.39%) |
| College or vocational school | 50 (42.37%) |
| Graduate or professional | 32 (27.12%) |
| Did not respond | 32 (27.12%) |
Abbreviation: GED, General Education Development.
Challenges to Donation or Transplantation
| Themes | “It got harder or scary for me when…” |
|---|---|
| I became afraid I wouldn’t be able to donate | “…there were all these tests to do, and if I didn’t pass them, it wasn’t like there was something wrong with me, I would just feel so bad that I wasn't able to, to do what I wanted to do for somebody…” |
| My family was unsupportive or worried | “…my family worried about quite a bit of things in regards to the donation…the rest of my family along with my wife just thought I was crazy. And they were worried that I that I didn’t know what I was doing, that I was doing it for the wrong reasons.” |
| I feared that I wouldn’t find a match | “I was scared that I wouldn’t find a match because I didn’t have a family that was alive or close to me.” |
| I became worried that I would get rejected if I asked someone to donate | “Honestly, I didn’t have the courage to do so (ask anyone to be my donor). I didn’t know where to start. I didn’t know what to say or even ask. I was so ashamed when I was so afraid that I, if I asked that I would just be rejected. And I didn’t think that I would be able to handle that.” |
| I became worried that the kidney wouldn’t work posttransplant | “I worried a lot about it (the kidney) failing because he needed it so badly…It was kind of his last shot and I thought, gosh, if this doesn’t work after everything we've been through…” -Donor |
| I began to worry about the donor having medical complications after surgery | “Can I live on just 1 kidney? What are the repercussions for me donating? What are the risks involved? Will this end my life? Or will my life expectancy I should say be impacted by this? How long will it take to heal? Do I have to change my diet or my lifestyle?” -Donor |
Advice Given by Living Donors and Recipients
| Themes | “The best advice I could give someone else who is thinking about getting a living donor transplant or being a living donor is…” |
|---|---|
| Stay hopeful while on dialysis | “…never lose hope sometimes hope was the only thing that I had and they really hung on to that and it worked out I also encourage everyone to try not to let dialysis get in the way of things.” |
| Share your need for a kidney as widely and as much as possible | “…don’t be afraid to announce your need, let other people know that you have this disease. It doesn’t mean that you’re actually asking someone for a kidney, but as you announce your need and that you have kidney failure, just let the need be out there.” |
| Be your own advocate for living donation | “…keep learning about kidney disease. Go on all the different websites, talk to people, talk to kidney donors, if you know any, talk to people who have received a kidney, and when you learn more about the disease, you will be in better control of your health…Those things will give you a sense of control and will put you in a better place mentally and I think when you’re stronger mentally, your body will be stronger um as you’re fighting disease and as you’re waiting and the better your outcome will be. So, keep going, keep staying strong and get connected with people.” |
| Do your research to stay informed about living donation | “…do your research, research the hospital that you’re thinking about going to and then just research all of the statistics on living kidney donation stories of other people, support groups get as much information as you can.” |
| Build a community to support you through LDKT | “But gosh, just talk to people. I would talk to recipients. I would talk to donors. There’s a really great living kidney donor network out there. There’s a social media component of it, Facebook, whatnot. And really, we’re all there to answer questions and walk people through it…there are some mentoring programs that I’ve been involved in, that you get to sit down and talk to folks who are getting ready to go in for that surgery about what your experience was like, and so many resources there.” |
Abbreviation: LDKT, living donor kidney transplant.